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kitegirl24 wrote in veryglutenfree
So I seem to have figured out over the last few weeks that I'm sensitive to gluten. I've been tested for Celiac's about 5 years ago so I don't think it's that. But can that change over time?? Should I get tested again?? It would be nice to have some people to run my questions and issues by who might have been there before... so I'm hoping there's still some life here somewhere :) If so, let me know!

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Hello there!

Were you following the diet when you were tested -- it might have showed better with a challenge test period before your biopsy. Happened to me.

Most of the blood tests will come back negative if you're genetically IgA deficient -- again, happened to me.

You may be gluten intolerant. Same diet, the small intestine gets less of a siege but you can be just as miserable in other ways.

The diet's kinda sucky to follow on the go but it's so easy when you figure how much better you feel.

Talk to your G.I. doc. They've finally been taking seriously folks who lack the genetic markers or antibody levels but who know how much their particular bodies are affected by gluten intake.

And yes, intolerances can wax and wane -- there's an awful lot going on in your body at any given time and you have to take this into account.

Be happy, this is one of the few serious disorders you can control by a change in what you eat.


thanks for the input!

I was not following the diet at all when tested. About 5 years ago my general doctor had me start logging food because i was having general digestive issues - cramping/bloating/relatively frequent diarrhea but not brutal. Just enough that she tested for Celiac's (negative) and i think also for a wheat allergy, but not sure. Nothing. She suggested I avoid dairy. Tried that with limited success because I love dairy, and unclear results when i did manage to avoid it. Had an endoscopy that came up fine. Went about my life, assuming it was just the result of law school stress. A few years later, I've been noticing that all too often, I have awful gas/bloating pains for about 5 hours, then they eventually go away. It most recently happened after pasta with red sauce, which made me suspect the pasta and thus the gluten. It's also distinctly happened after sushi, presumably from the fake crab and soy sauce, so i'm going to try eating sushi without those or other gluten-risky ingredients and see how that goes....

Anyway, it's been about 12 days since i cut the gluten out and i've been feeling awesome - although i'm not sure exactly what the frequency of the problems was before, but i'd say it was probably at least 1-2 times a week that it got debilitating. I read that the way to test was to avoid gluten for 2-4 weeks, then re-introduce it... so i figure I will re-introduce it Sunday at the 2 week mark, and see what happens... or maybe today because there's free lunch at the office and i'm SURE it will involve gluten... :/

Then I figure that if the problems to reappear, which i'm expecting, i'll go see my current doctor for another celiac's test and to get started on nailing down an exact diagnosis, if they can come up with one....

I have also ready that they're finally taking it seriously without the markers, which is good to hear, because i have a feeling that's the catergory i'll fall in, based on my last test results.

I have been struggling a little with finding grab and go foods, especially quick lunches. breakfast the last 2 weeks has been mostly Ensure or Boost, but I think oatmeal would probably be ok too at my level... at least the real stuff instead of the prepackaged. and I had an avocado one day, that was awesome! I found a few frozen Evol bowls that are gluten free so I'll probably do that a lot for lunches. And salads... but I've never been big on those :(

When you say it may have showed better with a challenge test period.... does that mean eating "normally" or particularly lots of gluten before the test? I'm thinking once I start eating it again in a few days, I'll go with lots of it, as that should help me tell whether it's causing the problems... and help it show up on tests if that is the case.

Thanks again for your response :) just now realizing how frustrated and isolated this can make you feel... yesterday i actually spent a full hour going to 3 grocery stores looking for a frozen lunch, before I found the frozen Evol bowls that were clearly safe without having to read a list of ingredients and do some googling :/ Helps to know there are others going through the same thing, and who can give some helpful hints :)

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